People with migraine do not treat an attack with triptans 43% of the time despite significantly more disability when they do not take a triptan than when they do. This finding, from a study presented at the American Headache Society conference in June, was not news to me and probably isn’t to you. Of course people with migraine don’t always take triptans—they’re expensive, we’re afraid of running out before the month is over, and we fear medication overuse (rebound) headache (and that’s excluding people for whom triptans are ineffective or contraindicated).
The surprising part was the clueless explanations Medscape offered for why we don’t take triptans for every attack. I was angry with the doctor they interviewed for the article before noticing that the direct quotes from the doctor are all technically correct (though perhaps a bit out of touch). It’s the information attributed to the doctor but not directly cited that’s particularly problematic. Having incorrect information published is never good, but I’m less angry about a reporter being clueless than a certified headache specialist being so. Here are some excerpts and quotes from the article and what I understand to be true for patients. If you have any additional thoughts, please leave a comment.
“[A]lthough formulary restrictions and/or insurance coverage may be playing a role in the nonadherence, the situation now is not nearly as bad as before many triptans became generic, when insurers would limit the number of allowable pills per month.” [excerpt from the article, not a quote from the doctor]
Insurers limit the number of generic triptans they’ll cover in exactly the same way they limit name-brand triptans. I’ve never heard a single person say they get a higher quantity of a generic triptan than of name-brand drugs. Do you get more triptans if you choose generic over name-brand?
“People will wake up at night with a screaming headache and, instead of getting out of the bed and taking their medication — which is what we tell them to do — will often lay there desperately trying to go to sleep for hours. I’ve often wondered if that isn’t some sort of confusional episode related to the migraine.” [direct quote from the doctor]
I have lain in bed and not taken medicine because it hurt too much to get up to get the pills or a glass of water. (I also wait to go to the bathroom until I’m on the verge of wetting the bed.) One of my most vivid migraine memories is dragging myself across the wood floor on my stomach to get to my medication in the next room. It took 45 minutes to go 20 feet because I had to stop to rest so frequently. Another possibility is that we’re told triptans aren’t as effective when the pain is already bad, so it seems like a waste of a precious triptan to take one when you awake with your head already screaming. The idea of a confusional episode being responsible is interesting, though. Do you think there’s merit to that idea?
“[Y]ou’d be surprised at how many patients wait to see how bad it’s going to get before they do anything. It’s almost like they’re hoping it won’t do what it did the last 50 times.” [direct quote from the doctor]
Triptans are expensive and we’re limited in the number we get each month. By using up this supply too early in the month, there’s always a risk of getting stuck with a horrendous migraine and not being able to treat it. We’re also warned of medication overuse (rebound) headache everywhere we turn—if we’re told taking medication could make our migraines worse, we’re going to be very careful about when we take the medication. And someone who has a lot of side effects from taking triptans is going to wait until it’s absolutely necessary to take the drug.
“Others may be trying to avoid a condition known as a ‘post-drome,’ Dr Ward said, in which taking a triptan at the first sign of a migraine can move the patient straight from pain to a feeling of sleepiness or unease.” [excerpt from the article, not a quote from the doctor]
What? I can’t make sense out of this one. Postdrome follows the pain phase of a migraine attack whether or not a person takes a triptan. Taking a triptan and jumping to postdrome is preferable to waiting through the pain phase to get there.
Did I miss anything? Are there other reasons you don’t take (or delay taking) triptans? I have an article pending for Migraine.com about rationing triptans, which I wrote before I knew about this study. If I’ve missed anything, I’ll add it to that article.
Triptans are tricky for me for multiple reasons. As the doctor said, my migraines typically begin while I’m sleeping. The pain does wake me up, but I usually don’t get up to take a triptan. Partially because moving is agony, but mainly because triptans don’t work for me if I’m already in that much pain. The only time they work for me is if I catch it during the prodrome phase. I don’t always take one though because I’m worried I’ll overuse and/or run out. Another reason I don’t always take them is because I get awful side effects. I will only take one if it’s right before bed so I don’t have to experience the side effects. Migraine warriors know their bodies pretty well. Calling it “inadherance” is not fair or true at all.
I have found that my dr will prescribe me 18 sumitriptan tablets per month, with what the pharmacy and insurance call a Prior Authorization from the dr. Ask your pharmacy about Prior Authorizations. Also the dr gives me tons of refills. Costco has the cheapest price for sumatriptan . So once I’ve used the 18 pills covered by insurance during the month I then get a refill of another 18 pills and pay for them out of my pocket, which Costco allows me to do without question since the dr has given me the extra refills. I just have to pay out of pocket and it never costs more than $25-30 for another 18 tablets.
I suffer migraines and i take relpax for long time, been having migraines since 1980. I found out i have Photophobia with my eyes i found a company called TheraSpecs bought some glasses changed my life. theraspecs.com/providers highly recommend this company. Glasses reduce migraine frequency and relieve photophobia and protect from fluorescent triggers. Hope that helps some of you cheers.
Hi all, I was also curious about the 9 pill of Imitrex, which I take on once in awhile. For the last year and 9 months my Doctor has put me on 25 mg of Topamax, twice daily, 400 mg of Riboflavin daily, and400 mg of Magnesium Caps daily and the result has been amazing ! I have had only 2 migraines since. And when I feel like im close, thats when ill take the Imitrex.
My headaches started 20 years ago, when I was 16. It seemed like every few years, they’d mutate into another type of pain. Now, the past three years, I’ve seen a new neurologist who said it was most closely related to cluster. The attack onset isn’t sudden, it’ll last about 1-3 days despite any OTC, barbiturate, heat/cold, massage, neti pot, etc. I’ve been to the quick clinic for a toradol shot, which only worked it’s miracle the first time. Two weeks later, it only relieved half of my pain (I guess the half that didn’t want to carve my eye out with a spoon, I should be thankful).
Anyway, cut to yesterday. Neuro RX’d an injectable sumatriptan. I forgot it at home. Got a headache at work. Spent 5 hours in agony before I had to leave. Stuck myself, fell asleep two minutes later. I woke up feeling a little out of it, but the pain was gone. I was told it’s effectiveness would diminish the later I was mid-attack, but I was pain free! Of course, this morning, I woke up with another one, only it wasn’t as bad as yesterday, which is leaving me with the feeling of “if I inject now, I’ll surely become immune down the road and then what..lobotomy??”
So my fear of using them stems from my experience of becoming resistant to other relief meds in the past.
I have a long history of chronic migraines. I have been through all of this with you guys, dying in pain trying to crawl to get the Excedrin. I was taking massive amounts of it before I got help. The MD’s are moving forward with possible MS diagnosis. Please please please get 2nd 3rd 4th opinions. My second neurologist is amazing. No i don’t clench my teeth. LoL. *facepalm*
I am waiting to get the spinal tap soon, and have been just dealing. Good luck to all of you.
Even if Dr. Ward was not quoted verbatim, I understand what he is saying in his comment (the one attributed to the article writer). Everyone’s experience is different. Personally, my post-drome is much, much worse if I take a triptan than if I don’t, and I doubt I am the only one. The drowsiness, dragginess, inability to think, etc. may or may not be side effects of the drug itself–there’s no way to be sure. But I wouldn’t dismiss the idea out of hand, and whatever the reason, I’ve experienced it enough that I limit my triptan usage because of it. I didn’t put the comment in the context of “patient blaming” at all. It is perfectly reasonable to feel that when you are between a rock and a hard place, sometimes you choose the rock (an untreated migraine), and sometimes the hard place (a treated migraine where you worry that you’re down one more pill you might desperately need later, are depressed, can’t think or talk straight, and unable to function well for most of the day). I know that not all doctors really get that, and those are the ones who patient-blame (which makes me as furious as the next person). But there are many who do.
Just found this site. So many comments are “me too”. Thank you. I buy extra imitrex off insurance, for about $10 for 9 100mg tabs. Cost of meds is my contribution here. I was just prescribed relpax 40mg? My pharmacy wanted a co pay of $140. I went to a discount prescription site, goodrx.com, [there are others] and found that Ralph’s pharmacy, yes the supermarket, offered the same drug for an $83 copay. All you do is print out the coupon and take it to the pharmacy with your prescription. I have used this site for other meds, and as unbelievable as it sounds, it’s works!
Hi there Chris. I had a follow up question to your website suggestion . So if I use up my insurance covered 9 sumatriptan for the month, is this coupon on option to get more for the month? I would just order it , use the coupon to pay ? Do pharmacies give you a hard time since the insurance won’t cover it?
So ridiculous. As you’ve all said, generic triptans are still generally limited to 9 a month. However, I have had luck with two HMOs that allowed me 18 per month with letters/forms from neurologists documenting chronic migraine. It is worth a try. I warn you it can be a pain to get approval. The first HMO just required a letter, and approved right away and in perpetuity. Then I switched insurance and they required a description of my complete medical history re: migraine (dates/doctors/all meds ever tried). I have lived in 3 states and had migraines for nearly 30 years, so needless to say that was pretty much impossible to provide. They finally took a list I made up from memory, although they required me to submit it to my neuro and have THEM send it (silly). It took them a month to approve (during which I ran out, of course). And apparently they will require a review once year. So. Frustrating but given the alternative (panic over running out), worth it. I refill each month even if I have enough so I can stash them for the 1-2 times a year I have status migrainous. I have also been cutting pills in half for years, but my neuro said doing that was probably contributing to the chronic migraine–so be warned. I have noticed that the next attack is likely to come sooner if I split them, and also noticed that they are becoming less likely to work (and then I have to take the other half anyway, just prolonging the agony).
My husband and daughter are patients of Dr. Ward and I can say from personal experience that he must have been incorrectly quoted. After decades of looking for a good neurologist we finally found Dr. Ward. He is the first to provide any kind of real solutions for my husban’s 27 migrain days a month and is the last person I can picture patient blaming. Please also note that if you are gettinf relief from botox then you should be thanking him because he was a huge part of the team that got botox approved for treatment of chronic migraine.
I also fear not having enough to make it through the month when I get a prescription filled that has all of six tablets for the whole month and I have way more than 6 bad headaches a month. Also, if triptans are supposed to be fore migraines, why do the manufacturers package them so that they are so hard to get into?! Sometimes when I have a bad headache, I can’t get one out of the stupid package! Once I even crushed a tablet trying to get it out. I hate those bubble packs where you have to peel up a certain corner and hope that enough of the backing comes of without tearing off in a little strip so that you can get the tablet out. I have difficulty even when I feel ok, but if I have a blinding, sickening headache then how do they expect me to get the tablet out.
Very interesting article. The part about laying in bed rather than taking the pill really hit home. I often lay in bed at 2am knowing I need to get up and take a sumatriptan, but just can’t get myself out of bed to do it. It’s 10 times worse in the morning and I kick myself for not walking the 15 feet to the bathroom the night before. On top of that, those pills are about impossible to open when you’re in the fog of a nighttime headache. Like most people, I only get 9 pills a month thru insurance, but I’ve also found that you can order them without insurance from a place like costco. So in addition to the 9 per month provided by insurance (about $7 out of pocket cost), I also get 18 when I need them and it only costs me about $28. Obviously that’s an expense, but well worth it and eliminates some of my balance of trying to decide which headaches are worth the pills. My doctor calls the 9 pill limit a joke so he’s happy to give me 2 prescriptions for the same pills. I do worry about long term affects of sometimes taking 20+ pills in a month, so I’m going to try and heed the advice of some commenters and try cutting them in half for awhile. One pill does the trick for me 9 out of 10 times so hopefully a half pill will have similar results.
As for immediate side effects, I don’t have the same zonked out feeling many of you describe. They make me a little more tired, but with 3 little ones at home I’m not allowed to be too tired at any point so they don’t seem to affect me like that. I’m a much better dad when I’m a little tired than when I have a nasty headache. At first though I was all kinds of loopy on these things, I seem to have gotten used to them now.
As studies increase on the benefits of Medical Marijuana, I’d be all over trying that if results looked good.
These comments are such a relief to read. One note I didn’t see mentioned that has been of help to me is using GoodRX (or many other pharmacy coupon options) and shopping prices by pharmacy. It’s a bit mire work but this way I’m less a slave to just what insurance will cover and can augment with just paying outright. I let insurance cover the more expensives forms of Triptans (nasal, injectables) and the generic prices for many with the Coupon rival copay costs.
Also, Ive found that excedrin migraine is NOT a good treatment for chronic migraine. It has a tendency to lead to rebound or medication overuse headaches, especially if taken often, like daily. I’d try a few weeks without the excedrin and use other things, mix it up. He may be experiencing rebound headache at this point. Go to healthcare.utah.edu for a very informative guide for headache patients. It is a free downloadable pdf document.
Prayers that you find healing for your son.
I’ve ordered it online from medicalmarijuanainc dot com. I got the Dixie peppermint CBD oil. It hasn’t appeared to do me much good. However, everyone is different and with a discount on your first order, it would be less than a prescription in most cases (around $35), easy to take, no side effects that I have found, and the peppermint does not taste too badly. Try the welcome25 discount code to see if it will work at checkout or just sign up and wait for them to send you a discount code on your first order. (This is just for helping you in your search. I am NOT affiliated with this company in any way other than my 1 initial order from them)
Thanks,where can I find that oil? Is it prescription? The meds the Dr just prescribed him this time,I am not gonna give him because all the side effects and reviews I’ve read… 90% of the people said they are really bad and my son doesn’t need to gain anymore weight for sure..his pediatrician referred him to neurologist and that appt is 6 months out smh.I wish something would work that doesn’t scare me to give him lol.people who don’t get migraines just don’t understand
Midrin worked great for me. Gone within 45 minutes. You can’t get the brand rx anymore, but you can get the ingredients. The Imitrex pills don’t work well for me. (Make me feel weird, and take 3 hours to get some relief.)
Hi Rene, you can get a generic version of Midrin from most pharmacies and a lot of insurance companies cover it. (From your comment, it sounds like you’re getting it compounded. That was the only way to get it for a while, but it’s more readily available now, though you may have to ask your pharmacist to research it.)
Take care,
Kerrie
My poor 10 year old(is 5’6&168lbs) has been having headaches almost daily(for 2yrs now) along with migraines(his aura is also quite scary coming from a 10 yr old,he passed out once) several times a week yo the point he misses a lot of school(&can’t take him to his pediatrician every time he has one because he doesn’t help) I also get migraines so I know what its like,he takes Excedrin migraine daily in am before school to try and prevent migraines but still is sent home..I’m then missing work..well his Dr first prescribed imatrex nasal 50mg and he is allergic so now he did maxalt (same dang class the pharmacist said)& yep he is allergic and it makes his b/p go to like 160/90(10 years old!) So my poor baby suffers..can his Dr not give him like ibuprofen 800mg or maybe Tylenol 3’s? He was prescribed those for his root canal(prior for pain)& it took his headaches away quicker then anything he has been prescribed and without the side effects.. I just wanna help my bubba 🙁
I have found that, other than triptans, aspirin and Aleve (naproxen sodium) seem to work pretty well as a first line of defense. You might want to look into CBD oil for your son, too. It comes from cannabis or hemp but does not have the THC in it that makes one high. Another thing, not all triptans are exactly alike. So trying a partial fill of an Rx of several different ones may help you find one that works for him. Good luck, mom.
Thank you all so much for all your great information, I just wish we all lived near each other. The support would be great for everyone. I get so suicidal when I’m on a long haul of headaches meaning everyday not breaking the cycles. My medication overuse is really bad. I use Triiptans every day I will admit it. I’m not afraid. I wanna die because they don’t go away. It gets so hard to go n everyday. But I love my dog and husband. I hope everyone who reads all of these keeps an open mind. Everyone be good to yourselves and enjoy the holidays as best as you possibly can.
Lori
J
Wow – I am so glad I found this site. I have chronic migraines for about 14 years now, and suffered for a long time on the 9 triptans per month until we figured out that I could have 2 types of triptans and get them both refilled per month (Naratriptan and Sumatriptan). My main triggers are low estrogen (I lost an ovary and when I hit my mid 30s I started having early menopause that has just dragged on and on for 10 years), and low cortisol (I have Addison’s disease). So in addition to my triptans I often have to take steroids concurrently or the headache won’t go away. One other thing I discovered was that Zofran given for nausea actually was a HUGE migraine trigger for me, literally – 1 tablet of zofran and I have a 3 day migraine that is intractable. Wearing an estradiol patch has helped reduce the number of migraines I have per month from about 25 to about 15. Still…having a migraine every other day absolutely sucks, and very few people really understand just how debilitating it is. I have been working on my PhD for the last 4 years and my adviser – I am sure she just thinks I am wacko when I tell her that I couldn’t get something done because I had 8 migraines in the 2 weeks since we last spoke…unless you experience it I don’t think you can ever really understand just how awful it is. I am so sorry so many of you also suffer like this…it helps knowing I am not along but it makes me sad to think of the pain you all go through 🙁
@Lori Have you tried marijuana, I hear good things about that? Its tough, I also am woken by migraines in the morning, by which point theres no point in taking a triptan as the pain is too great and it wont work. There is also a migraine surgery which blocks the tiny veins in your temples.
Hopefully you’ll find something that works soon, maybe even the new one, that uses antibodies that block a chemical in the nervous system called CGRP.
Hugs
Hi, I’m Lori, I have had headaches since I was 15years old. I know am 54 years old. I have a migraine everyday at 6:00 in the morning or anytime in the morning actually. I also have schizophrenia and bipolar polar I have been to 5 headache hospitals in the us top hospitals. my parents also suffer with migraines. No know s why I get them. I had a hysterectomy to get rid of them didn’t work, I have had every injection know to man. Did Chinese medicine,acpunture,chiropractor and even neurostimultators. Planted in my head. Did Botox.the problem being daily chronic headaches and intractable migraines and medication over use. I bet everyone of you including myself is in a medication over use. The problem being they set us up for this every dr we see. No one knows more about a headache than we do. They give us this medication then another one and this will work and so on.but guess what they keep coming back and they want to tell us were using to much medicine. Come on know you all did this to us. My headache clinic is 100 miles away from where I live. my Last visit my dr Said enough is enough I have to go cold turkey at home because I use Tristan’s everyday for years. And firocet together. I am making my self worse and can’t get better. My husband has given me the st home but it’s hard to wake him up.so I Tristan out. I’m afraid of the pain going off I’m suicidal just thinking of quit ing. I’m afraid I won’t make it.so I use everyday.see be they put me in medication over use. Especially the pharmaceuticals company s. Just thought I’d share my experience with you all.
The reasons expressed already; concern over running out of medication and cost of non-insurance paid medication, along with the unending warning of side effects like rebound headache and seratonin syndrome or heart attack are the reasons sufferss don’t always take their medication. From my perspective, I’ve never been sufficiently confused to explain not taking it, but we simply can’t waste it, it’s too precious.
I am taking vimpat , butal, Maxalt and botox shots every 3 months that I just started . I’m on my second treatment . I have noticed with the botox that I still get them as often , but the intensity is not as great so therefore , I haven’t been into the er getting shots for them when they are so terrible I can’t function. I was on pain level before to at least a 10 down to about a 6 or 7 now . Sometimes a 4. Still nauseous and migraining , but I think the botox is making it almost tolerable. I don’t like taking the other meds , but of I didn’t, I’d be in a world of shit daily. Have had migraine now going on 15 years at least
I get 12 relpax pills a month. I get botox injections every 3 months and also take topamax daily for my headaches. The main reason I don’t take a relpax unless I’m in complete agony ( which is bad considering I have a headache every single day) is because I’m worried I will become immune to the ingredients and it will no longer be affective.
Keith, my headaches aren’t all that severe but they are constant and unrelentingly distracting. I do have some of the classic aura though too. The problem for me is not so much cost, as the risk of medication overuse and the threat of my once reliable medication becoming ineffective. My neurologist has only allowed me a total of 20 rescue/abortive meds per mo. Which is a combo of 14 Fioricet and a max of 6 Relpax or sumatriptan. This quantity is fairly common. If I need to use the Relpax 6 times before the middle of the month, I know the rest of the month will be uber miserable! This is what we mean by rationing our meds as managing our migraines. So far there is nothing I can take to keep me migraine free every day and until there is, this is the best I can do.
I was diagnosed with migraines at 18…almost 15 years ago…tried midrin first, got some really bad side effects (found out later that I was allergic to Tylenol). Then was put on Imitrex 100mg (was having migraines for years just didn’t know it). That worked for about 5 years, then was put onto zomig, started out with 2.5mg and I was always going for that 2nd pill, then after speaking to my gp at the time got the upgrade to the 5mg pills, now they no longer work, and I was only getting 8-9 every 30 days, and my migraines are chronic. Now zomig no longer works and the medication that I am being proscribed Frova, is not covered by my insurance…ugh…lets see now, from the beginning of the year to date I have missed 3 days, had multiple phone calls made to gp’s office and to pharmacy, went into urgent care for a “migraine killer” and have been told if it gets worse again (fingers crossed that it doesn’t) to go to er. I have another appt on Thursday and here’s hoping that I can find something stop the pain that my insurance will cover.
I have been reading this forum for some time now – I posted my situation way back then. I get 9 100mg tablets of Sumatriptan a month, which I split into 3 – so I have 27 doses a month. I take one anytime I feel like a headache starting – sometimes I do wait a few hours, as I never have super bad headaches like poor Angie above (hallucinations, vomiting). I feel really sorry for her and those like her – I feel very fortunate to only have what I have. I don’t think the Sumatriptan cost all that much – my insurance pays about $3 or $4 per tablet. So if I had to, I’d find a way to get enough doses that I didn’t have to endure a whole day without taking any because I was “saving” them for when I had a really bad headache. I also would try cannabis – but I don’t now because of drug testing at work, and it is still illegal here (not for long though.) But I would encourage those who are limited on their available drugs to not endure another headache because you are saving the meds for a worse time. I would consider changing doctors, and talking to your insurance company, or just budgeting for paying out of pocket. I would do whatever I had to not to endure headaches!
ALL of these comments have hit home for me. As a fellow migraineur, bless all your hearts for sharing. It really does help to know we’re not alone in this hell.
I have been told that triptans are “abortive medications” with the word abortive meaning to stop something at its very beginning before it becomes full fledged. Therefore the med is meant to cut the migraine off at the pass. I have also been told that if I wait too long and the migraine gets too far along, it won’t work. Therefore, I won’t take it if the migraine is already too bad because I don’t want to waste it. I also won’t take it super early and until I am fully sure it’s a migraine coming because I don’t want to take it and waste it on something that’s not going to be a full blown migraine. So I bide my time, looking for that sweet spot of not too early and not too late. . . And sometimes I miss it.
And not a word about those who deal with the NASTY side effects of triptans (and how very few options we have if the side effects of triptans are worse than the migraine. Yes. Worse than the migraine).
Think of it this way: I could lay here with this already-awful (all by its little ol’ self) migraine or I could take meds that will make it ten times worse. The pain pulsating in my head intensifies. Add hot flashes/sweats plus 6-hours of painful vomiting and -did I mention I also have a sleep disorder?- hallucinations. Throw in the occasional bout of (painful) diarrhea too. Toss in an anxiety attack as well, because I’m seeing crap that’s not actually there and worried that maybe I’m not actually kneeling over the toilet bowl after all but -after finally passing out in the bathroom floor next to the porcelain throne or on the throne with my head hanging in a puke-filled trash can – will wake up tomorrow to find I’m in the living room beside my puke-filled cat’s bed-basket or on the kitchen island next to the vomit-coated fruit bowl because I was seeing and hearing things that weren’t actually there.
Really, the patients like me aren’t worth mentioning as a reason why people don’t take these medicines? Gee, thanks. I’ve just been waiting for a medical alternative to these meds for almost two decades now.
I was pretty distressed when I read that article, too. I’m limited to two triptans a week, so of course, I don’t take triptans with every migraine! My headache specialist understand this. He has ideas for me to handle the other migraines. The doctor they interviewed for this article seemed to have no idea of limiting medication – or they chose not to include those comments in the article. But, it certainly sounded like he thought we should all be taking triptans for every migraine. A more common reason for his statements is probably that he was thinking of people with episodic migraine, not chronic migraine. When I was in practice, I did have patients who would only treat one or two headaches per month because they didn’t like medications. Those people should have been taking their medications more often. But, insurance would have covered 9-12 tablets per month, so that wasn’t an issue. Anyway, bizarre comments.
As a UK resident, thankfully we don’t have the insurance imposed restriction on our pills. However, the specialists I see at the hospital here have strictly limited me to treating pain (in any way at all) only 6 days a month, which when I have chronic daily headache as well as chronic migraine, is very difficult. As someone else wrote earlier here, I often can’t tell if I’m getting a severe headache or a migraine as they feel the same at the start (and I don’t get aura). When I’m at work and a migraine starts to come on, I have to drive home before I can take my triptan because of the side effects so I will often resist taking the triptan until much later than I should (and therefore reduce its efficacy which is very frustrating). If a migraine comes on and I don’t have any plans for the next 3-4 days, then I won’t take my triptan and ride it out the hard way because of my 6 treatment days a month limit. The suggestions for why people don’t always take their triptans in that article are so naive, they would have been so much better off speaking to patients about why instead of an out of touch doctor with their wildly out of touch conjecture. Enough ranting now 🙂
I do not get more pills each month just because “generic”. It’s not just a cost thing for the insurance companies. Several years back my doctor told me it was not recommended to take more than 4 doses in a month. (How laughable is that, kids?) I get 9 (100mg) pills and 2 injections. I use them all. Pills get cut in half, because sometimes 50mg works and then I can stretch them out longer.
I DO sometimes have episodes of confusion with mine, usually when they’ve come on hard and fast, rather than creeping in. I’ve lain curled up, hiding, groaning, wanting to die, until my guy asks me if I’ve taken my meds. Gosh! Why didn’t *I* think of that?!? Because I was in too much g-d pain TO think is why.
Sometimes the nausea is too bad to put anything in my stomach, so if I have no injections, I’m likely to use nothing.
Sometimes I’ve already taken my maximum allowable for the day and the pain still isn’t gone.
And, as indicated above, when your stock gets to a certain number, those last precious couple of doses become like the ring and you are Smeagle … “My preeeeciousssss. I loveses my precious … I wantses my precious … “
The “postdrome” thing is actually really interesting to me. I’m wondering if that’s not what I experience with tryptans–but I think they might have it identified wrong. I’ve taken multiple different tryptans, and they all make me feel too weird to ever want to take them with any regularity. I describe it as if it took away (or more often just blunted) the pain, but as far as my body is concerned, I still have a migraine? I feel weird as hell and all of the other symptoms are still there, even if it’s without the pain; I haven’t skipped to the end of the migraine, and simply having a migraine is actually somehow preferable. It’s really a combination of all the reasons: cost and scarcity (especially in the context of my daily headaches), it’s impossible to tell whether my headache will be a normal headache or a monster migraine, side effects, rebound headaches (I tried a new nasal spray one recently and the rebound headache was worse than most of my migraines and happened within a couple hours), and then what I talked about with head pain actually being preferable to how I feel having taken one. In any case, that doctor does seem very out of touch.
Mine was previous post and I entered email incorrectly so sending this to keep informed thanks.
I haven’t read every comment but wanted to offer some advice incase it helps anyone. It’s not a perfect cure as I’m now getting side effects and obviously what works for one person doesn’t work for all but I felt worth mentioning that sodium valproate has really helped cut my migraines down. Sadly it seems I’m now getting side effects (shakes, fatigue, various symptoms) which I am being investigated for but if i have to pick taking meds or getting migraines back almost daily I’ll stick to the tablets. Sorry if this is old news but if it helps one person it’s worth it. Cheaper than triptans so Dr’s are happy and you might be almost migraine free! If I’m unlucky I’ll get one a month now around my period x
I’ve read so many articles like this one that are frustrating to say the least. I’ve had chronic migraines now for 16yrs and I’m still begging and pleading with my doctor to understand the severity of my attacks. They occur almost daily even with a preventative medicine. I’m limited to 12 rizatriptan a month which for those who are like me know it’s not nearly enough.
i am unable to use triptans due to possible dangerous interactions with other medications that I take. I use topamax daily to help prevent migraines, which, finally after a year and finding the right dose, has need reduced the frequency and intensity of my migraines (I just have to be super careful of triggers) but I now use generic Fioricet as an abortive. And I am the same about my fioricet, it seems, as people are with their triptans. I always try other methods first, because of the 1) price 2) rebound effect 3) fear that I’ll end up taking them all before I can get them refilled (this is a delicate line to balance)
I do take triptans for almost every migraine episode and I get them nearly daily. My doctors are concerned about the frequency of my use and have prescribed a Toradol nasal spray to help me break up my Triptan use. However they say there isn’t that much evidence for overuse headaches with triptans like there is for Nasaids like Advil. When u get migraines daily like me, I don’t feel there are many other options but to treat if I’m going to have any level of a normal life. I have several different forms of triptans (nasal sprays and injections as well as pills) to avoid running out. My insurance is pretty good though and i called last year to increase my Triptan coverage- they adjusted without an issue. I treat pretty early when I start to recognize symptoms or the triptans aren’t very effective. I also just got the Zecurity arm band- still need to try.
Put these doctors in medically induced migraine state and they may whistle a different tune after experiencing the pain we go through. It’s like a male gynae trying to tell you how sore or not it is to give birth to a child. Unless you have done it, you might have all the medical knowledge but to experience it is another thing altogether.
When I get awakened with a migraine at 4 am I take a triptan and it usually does not work due to it is too late for it to take hold. I then go to my physical therapist and get dry needling and cranial sacral therapy done. They also add heat. This works for me and literally lifts the migraine within two hours. So thankful this.
Oh boy, I used to think that I wouldnt wish migraine on anyone but I changed my mind, everyone NEEDS to know what a migraine feels like, its no good explaining its like having a broken leg and someone jumping up and down on it for days. Its not that we dont WANT to take the sumatriptan, its that we CANT, I only get 6 per month and they arnt sold over the counter anymore inthe UK so my first course of action is 2 co-codamol and 3 aspirin with a can or glass of coca cola, if that doesnt touch the pain then I have to take a sumatriptan, but I 9 times out of 10 dont take the suma because they are so limited and being chronic migraine doesnt make a blind bit of different to the doctors who dont have a clue how painful this illness is. I was born a month premature and I am convinced that this along with a family history of migraine is why I have them so badly, my aunt has identified her triggers etc, I have so many its impossible to predict what will set me off, my brother gets them too but his would only get maybe 2 or 3 bad ones a year. So I feel sorry for all of us with migraine if thats the doctors attitude to the conditional. We need answers, not treated like drug addicts or wimps or anything else you care to call us, its a genuine neuro condition. I’ve tried alsorts over the years 30+ and counting, now I am on daily amitriptyline 60mg and its brought it down to 12-14 migraines a month but I had to up my dose from 50mg 3 months ago as they were getting worse again. So I suspect I’m developing a resistance to it. I also drink as much water or liquids as possible so I dont damage my kidneys and liver with all the painkillers etc I take.
My insurance will pay for relpax and sumatriptan in both the pill and injection. I get a hard time from the pharmacist often because he or she is assuming I am taking them together. However, I will say I have really tried to cut back on my triptan use as awful as I feel because the more I use, the less effective they become (for me). It is such a delicate balancing act.
Similar to someone above, I have found that I can get more sumatriptan than 9 per month, I just have to pay full price for packets in addition to the 9 covered by insurance. It isn’t that expensive, and worth every penny. The problems I have found are that the pharmacy are the ones who treat me like a drug seeker. “You’re only supposed to get 9 of these,” and eye me up and down. Like what am I gonna do? Go get smashed on Immitrex? Please.
Also, aren’t some triptans OTC in other countries? What’s the deal?
I do worry though that I overuse compounding the problem. I’m a father of young children, babies, and as a result I am lacking in sleep. That is a big trigger for me. Because I am so tired I probably overuse caffeine, also a trigger. There is no ‘convenient’ time to try detoxing from sumatriptan. Is anyone out there vetted in the process? Tips, advice?
First, I am so sorry for all of you, it’s sometimes an agonizing existence. I have had migraine for 40 years and have found only Zomig will help, sometimes. The reason I don’t take one right away is because of the side effects. It can be bad for your heart, it upsets my stomach and makes me feel anxious.
There are varying degrees of migraine. Is this the one that’s going to pass in 15 minutes? Seriously. Why waste a triptan on minor inflamation? I have had a daily headache for 20 years. That being said, I found my formulary online. I learned that I could get the same number of triptans at 200 mg as 100mg. I also learned that in regard to the nasal abortive a well placed period is the difference between being covered and needing prior approval.
I just discovered this blog…Hallelujah. And, have been reading through old posts. I feel must less alone reading through Kerrie’s posts and the reader comments. I definitely ration, largely because of the insurance limitations, but also because my doctor suggested that I may have been having medication overuse headaches. I’m not sure I took his recommendation exactly, but I quit the triptan cold turkey and just took meloxicam (strong NSAID) daily, and ended up with the type of migraine that left me crying in bed for a couple of days. I tried topiramate as preventative….it did nothing. I am now on daily duloxetine (SNRI), which dr. recommended as a replacement for sertraline. I’m getting as many headaches as ever and probably feel more depressed than when I was on sertraline. I find it very difficult, as a patient, to have to decide when a headache is triptan-worthy. I also found it difficult to try to figure out whether I’m overtreating or undertreating myself. I also hate having to question the best professional to go to. I feel that for many doctors, if they’re run out of options from their bag of tricks, they leave you hanging. There are some notable headache centers (I live in Chicago where we have the Diamond Headache Clinic, but have heard that they load you up on a lot of drugs). There’s so much more burden on the patient with this disease than, say someone with diabetes or heart disease. It seem the protocols for other conditions are much more established.
I have been diagnosed with chronic migraine for over two years now. I take rizitriptan as an emergency med when I can feel them come on. (I was also prescribed the sumavel dose pro shot as a backup if I got no relief or waited too long. But it made me feel so beyond terrible, I stopped after tying 2 shots)
For this Dr or writer to say that we’re basically toying with seeing how bad our migraines can get before we’ll cave and take our emergency meds is almost degrading. I have a generic form, and I am allowed the same number of pills a month as when I had the brand name. It says right on the package not to take more than three doses in a week. Sometimes you have a bad week, and when you get a raging migraine after already using the recommended weekly dose, of course I’m going to try non-medication alternative methods to abide the recommendations. Which for me is how I end up in the ER to get relief, or if I’m lucky enough to drive 40 minutes to my neurologist to get an infusion.
I also agree with you that sometimes they get so bad, it’s hard to do normal things that people not in pain take for granted. I have laid in bed at two am before knowing I had to get up and walk 20′ to the kitchen to get relief and just the thought of moving makes me want to cry.
This article is bogus, this is people who do not understand the situation because they’ve never been in it, and probably never will be.
I start getting a migraine at night, and initially I would hold off on taking anything, and just try to go to sleep, because I felt it was a “waste” of triptan to take one right before I went to sleep. But I learned the hard way that going to sleep with an oncoming migraine causes me to wake up with a raging migraine. So now I just take the triptan at night.
I have chronic daily hemiplegic migraines with aura.
If I take triptans every time I have a migraine I would overdose, and the symptoms of overdose don’t go away quickly. Anyone who has experienced the crippling chest pain from Imitrex shot understands. And for the record most “side effects” are really indicative of overdose and the worse it gets the longer it takes to recover from.
So I use a mix of planned event dosage to accommodate my needs to function, and a sort of “ER avoidance” routine that’s loosely integrated as needed.
My Neuron has said not to use triptans for every migraine, since she is well aware of overdose risks.
It’s not just patients having to weigh running out of triptans and trying to hoard a bit against a feared “insurance stops paying” (like mine did with Frova).
It’s not just difficulty opening bottles when aura hits.
It’s not just wanting to sleep one out and save the “intervention” for a day that needs it more.
It’s not just cost.
It’s not just side effects.
People with migraines often don’t want to take triptans because taking it means admitting it’s happened again. No matter how often or long you’ve had migraines each one hits like a new offense, a new shocking attack that shouldn’t happen.
It’s not like other chronic steady pain that eventually you get adjusted to somewhat. Migraine pain jumps to levels you can’t bear and feels like an attack. It feels like coping with a violent assault.
Psychologically nobody wants to accept that it’s happening again. There are so many reasons to “save” or “skip treating” and underlying it all is this deep resentment of having to treat it at all. It always brings a “why is this happening to me” astonishment and it is perfectly normal for the stages of denial and acceptance to take time.
The moment I realize the migraine has come is the moment I start denying that reality, and that progression from disbelief to reluctant acceptance is a perfectly normal response.
Until someone has had a migraine, they won’t understand.
Anyone who has, gets it.
Saying patients are unreasonably optimistic completely ignores the reality that every migraine attack is a unique crisis and patients have to process it.
My recommendation is to put migraine routines on paper. Have set “responses” and if possible have a partner who knows to say, “which response do you want to try first”. Just being proactive helps. Neurologists would do well to offer some kind of form or kit to help patients work out what works, put options clearly down, and plan in advance exactly which steps to follow.
A proactive plan can help patients disconnect from the struggle of facing another attack because they have something to do.
First wave of nausea? Drink some blue Gatorade, dim lights, put ear plugs in, gather kit, get home if possible.
First wave of weakness and dizziness? Take caffeine if needed to get through long enough to get home. Red candy has stimulants, maybe this is a good time. Figure out what “first steps” you need to do. Get home, gather kit, be sure comfort measures are in place. (Cold packs ready etc).
Each patient needs to look realistically on their situation and have a plan.
If you need steroids to get through the holidays then don’t use them the month before. Etc.
Plan occipital nerve blocks for especially busy times full of triggers.
Being proactive means facing the psychological factor of migraines bluntly and saying I will have another migraine, I know I will, it will hurt. So this is what I can do if it hits today, or this weekend, or whenever.
Instead of telling patients just to “take as needed” migraine Drs need to tell patients to PLAN when and how to use their RX options. This helps eliminate ER trips, overdose/side effects, and the whole approach means a more positive attitude.
Accepting that migraines come is the first step in denying them power. And that’s the first step to being able to skip the psychological interaction with each migraine as a discrete event, and tie it in with seeing “today I will be in pain, so tomorrow I can use triptans” as a positive step in self care instead of some kind of failure to follow directions.
The reality is we don’t use triptans every day. And that’s ok.
It is heartbreaking to read all the comments. I live in Canada and I have unlimited access to medication (also payed by my insurance). I can’t imagine having to ‘save’ my triptan in case of emergencies. I realize how fortunate I am. I take Botox injections, which do not stop the migraines, but reduce considerably the level of pain. I also use Zomig, which is usually effective, although the side effects are brutal for me. I can’t really function on them (work or drive-I had a car accident because of the medication and learned my lesson). In spite of all of this, I still wait before I take my zomig. I have the impression that if the migraine and the pain settle in, the triptan will be more efficient. I don’t know why I believe that. I would love to hear about the experiences of other migrainers on that subject. Thanks.
Emma, studies have shown repeatedly that triptans are most effective if taken when the migraine pain is no worse than mild. Taking the triptan at the very first sign of a migraine, even before the pain starts, works for many people. Others find that they don’t get relief unless the pain has begun. In either case, letting the pain settle in generally makes triptans less effective. But with brutal side effects, it makes sense that you hold off on taking the Zomig. I hope this helps.
Take care,
Kerrie
I was on zomig before switching to rizitriptan. It works faster for me and the side effects are almost zero. I would reccomend asking your Dr about it.
I think that there is another very important reason that patients do not always take the triptan prescribed. Patients do not want to risk being seen as drug-seeking. If patients express that nine trip tabs are not enough, doctors perceive two things: a) the patient has not followed doctor instructions by taking a triptan each time the pain starts; and b) the patient is a drug seeker who wants medication to make the pain go away. As a person with chronic pain, it is so frustrating to have a doctor tell you that you are not following the plan (even though I don’t have enough meds), and when I discuss changing the plan, I get labeled as drug seeking. The medical system really needs to get its act together on this one!
Kellie, have you had this issue with triptans? I’ve only heard of people being treated as drug-seekers if the drug has a “high” associated with it. That’s usually opioids, but occasionally Fioricet or Midrin makes it into the mix. I’m not questioning your experience, but I’d like to know more about it since I’ve never heard of it before.
Take care,
Kerrie
Yes thanks Davida, if I can get 30 sumatriptan for $55 I’ll be happy as a mosquito in a nudist colony. After reading a lot of other people’s posts, I feel very fortunate that 33 mg of sumatriptan works most of the time for me.
I did try something new this morning – I woke up with an annoying but not severe headache – I took a naproxen (OTC strength) with 17 mg sumatriptan (I cut my ⅓ in half). Unfortunately this didn’t help, and I had a minor but annoying headache. After waiting over two hours for this to not work, I took another 17 mg. and finally had no headache after 2 more hours.
Darn, I’m sorry the lower dose plus naproxen didn’t do the trick.
Kerrie
Hi-
Just wanted to join in and say I got around the insurance limit by taking generic, and paying for the sumatripitan myself. I get the prescription filled at Costco, 30 at a time for about $55.00. Not cheap, but not much more than a copay. I would suggest shopping around, but it is possible. At least I no longer need to decide if I am saving a pill, or having pain.
Good luck!
Davida, thanks for sharing your solution. I’m glad you’ve found something that helps you.
Take care,
Kerrie
Thanks Kerrie. Yes, that all makes sense. I’m glad I don’t need more triptans than what I’m getting. I really would prefer to try cannabis (pot) but it is still illegal here. I hate taking chemicals. There us another thread here that discusses cannibis, and some people get good relief with it.
I still think anyone who has found something that gets rid of a migraine should talk with their doctor to be sure they get enough to last thru the month without running out. It is crazy that an insurance company would limit someone’s medicine.
Migraines are horrible and debilitating. I wouldn’t wish one on my worst enemy.
Keith, I agree it seems deeply unfair. As frustrated as I get with my own insurance, I understand the limits. I pay a high premium each month, but my health care costs far exceed that amount. Insurance is intended to spread the risk (and cost) across healthy people and sick people, but with the high cost of drugs and health care services, even relatively healthy people often cost more than they pay in premiums. The entire system is screwed up and I’m at a loss for what individuals can do about it.
Take care,
Kerrie
Yeah its pretty ridiculous that they can have quantity limits on meds. However, apparently it is backed up by data on the appropriate medical use of that medication. For example, I think some of the Triptan limits are based on rebound risk (and how many pills are supplied in a package, such as 9 for Sumatriptan). Some insurances are more lenient than others with overrides. However, some doctors refuse to do it, either as they don’t deal with any extraneous insurance stuff (time=money and they don’t get paid for their staff taking the time), or they think it is overuse.
Its unfortunate we have to hold off taking Triptans, as often we would use less pills and have less pain & symptoms when we take them early. Its also unfortunate that Triptans aren’t helpful (or able to be used) by all people.
Luckily I can get two different Triptans in the same month. They would save money if they let me get two fills of Sumatriptan in the same month, rather than Sumatriptan and Amerge. That is one thing to check for, as is double checking you can’t fill the same Triptan more than once a month (sometimes you can, and just pay another copay), and seeing if you can get the same relief with half a pill (asking for a higher dose if its available / required). Otherwise, try your luck with a prior authorization for a quantity override if your doctor is willing. Best wishes.
Kate, the limits actually started before MOH became a widespread concern, but MOH will certainly keep the limits in place. The original rationale was that patients don’t need more than a few triptans a month. That’s true for most people, but not all of us.
I agree everyone should at least try to get an override. It seems like people with health insurance through a job have more luck with insurance overrides than those of us on the private market. My doctor requested 30 tablets a month. My insurance company told me they would have approved it if he’d asked for a “more reasonable” amount, like 12.
I’m glad you can get two different triptans a month. I can, too. Unfortunately, only one kind works for me.
This seems like a really disjointed response to your comment. I hope it is logical!
Take care,
Kerrie
I too am limited to 9 Sumatriptan 100mg per month by my insurance, and must get it mail order. I’ve been on the Sumatriptan for a few years – never knew I had migranes before then – just thought they were headaches, and all the doctors I’d seen (gp mostly) never offered that I should be checked by a specialist – they never questioned me about my headaches, just listened to me and offered no solutions besides ibuprofen, which never did help much.
I began cutting my Sumatriptan in half, then into quarters, then thirds as quarters didn’t seem to work most times, and I’d take a second quarter. I do not get totally debilitating headaches, but sometimes worse than others. The Sumatriptan always works – sometimes takes over an hour to kick in, used to be a half hour. I take them most days now – so I’m just getting a month out of my 9 pills.
My question to all is, why should insurance companies be able to dictate how much medicine we can have? I for one think we should revolt – is a class action lawsuit needed to get this corrected? I’m not in as dire straits as some of you are – I take my 1/3 every time I need one – but it really is insane that insurance companies can dictate the amount of meds because of cost. They don’t specify how much chemotherapy a cancer patient gets do they?
Keith, the latest thing I’ve heard from insurance companies is that the FDA shows no therapeutic benefit for patients receiving more than X number of triptans a month. X = whatever the insurance company says, but never more than 9. Limits started not because of fears over MOH—though that will keep them firmly in place—but because insurers found that most patients only used a few a month and didn’t need as many as were typically prescribed. That’s true for most people with migraine, since most people with migraine have episodic attacks. Unfortunately, it’s those of us with chronic migraine that suffer the repercussions of the policy.
I don’t know if a class action suit is possible. Limits on expensive drugs are becoming more common. I know it happens a lot with HIV drugs. Here’s an interesting article by ProPublica on the issue: http://www.thedailyheadache.com/2014/09/insurance-companies-raising-co-pays-shifting-drugs-non-preferred.html. It might be worth contacting one of the signers of the mentioned letter to ask about lawsuits.
Take care,
Kerrie
One thing that is confusing.. the doctor says to be sure to take the triptan at the first sign of migraine, and to take another two hours later if you are still having symptoms.. then in the next sentence they will warn you about triptan overuse/rebound. Also, just a note to all, once I started seeing a Headache Specialist/Neurologist I had no problem whatsoever, getting a preauthorization for a larger quantity per month (in my case 18). Their office seemed to know much more how to work with the insurance company with that. On the bad side, even after the preauthorization was approved and good for two years, I found out (when attempting to get a refill) that they allow 36 tablets every 75 days.. so they have stretched the number of days inbetween. Apparently, I need to try to schedule fewer migraines! I am now in the process of going through the preauthorization for Botox. I sure hope it goes through and that it works.
Debbie, this is an evergreen source of confusion for people with chronic migraine and there’s no good answer. We’re told to medicate every migraine or we’ll have more migraine attacks and we’re told to not medicate too often or we’ll have more migraine attacks. It needs to be individualized to every patient, which is tough because there aren’t enough doctors with enough knowledge to help all of us sort this out one-by-one. Best of luck with the Botox. I hope it helps.
Take care,
Kerrie
I can’t even take triptan meds. They do absolutely nothing for me and the fact that you can only take 2 in a 24 hr period always left me totally screwed. I now take topamax which helps some but not as much as I had hoped it would. My neurologist is still trying to find that winning combination.
Megan, I’m sorry triptans don’t work for you. It’s good that you’ve gotten some relief, at least. Many of us need to add multiple medications together to find the most effective combination. Unfortunately, that that combination has to be is different for everyone.
Take care,
Kerrie
I don’t always take triptans because the narrow window in which they’re likely to work for me is extremely small. Also, I get migraines and/or auras just about daily and I don’t want to get a headache due to overuse. Even more scary than getting a rebound headache is the perception by doctors that my constant migraines are caused by medication overuse. Which is another matter entirely.
However, I know that my Maxalt does not help at all and is just a waste if I take during the aura pre-migraine, or longer than 40 minutes after an attack has started. And man do I wish it worked during the aura since the aura is of often more disabling than the actual migraine. There’s also been plenty of times where it was just pointless, it’d be like trying to kill a Grizzly with a nerf gun. The most vivid migraine pain memory I had was that I hadn’t eaten maybe in several days and was severely dehydrated due to a very long very bad migraine. So in the middle of the night I crawled in the kitchen and was so nauseous and so exhausted and in so much pain that I just laid on the floor moaning in fetal position holding my head for what seemed like forever.
And when it’s that bad the last thing I want is to hear “it must be overuse”, no, I want it taken seriously and get steroids or whatever else I need to calm down my very damaged brain.
This doctor is a mess, and is clearly a part of the problem in regards to us getting proper treatment, and even more importantly being treated properly and with respect.
Syn, I’m sorry you have such a narrow window for a triptan to be effective. How frustrating. We have to deal with so many constraints. Medication overuse headache is a serious concern and can definitely worsen migraines for some people, but it’s not the case for everyone. It’s frustrating that it’s applied to everyone with any kind of headache disorder even if they’ve had an extended period of high migraine frequency without meds.
Take care,
Kerrie
I get 9 Relpax per month but had to back down on the dosage because they made my legs ache and gave me a sick feeling. My neurologist has been a lifesaver; however, by prescribing a migraine preventative that I take without fail every morning. I chose on my own to cut that prescription in half, though, because I felt that it was causing increased eye (nerve) twitching, although my neurologist assures me otherwise. I’ll keep my own counsel there. He also convinced me to wean myself off of Excedrin migraine which I was taking on a daily basis as my only form of caffeine. My headaches reduced by half over a period of about 6 months. I still have the occasional “can’t function, can’t move, just shoot me” migraine, but they occur either once or twice a month out of the blue or are in cahoots with my menstrual cycle.
Cinnamon, I’m so glad you’ve found an effective preventive and seem to be benefiting from stopping Excedrin Migraine. You may want to ask your doctor about trying a different triptan—it could be that you’re having side effects from Relpax that you wouldn’t have with a different medication.
Take care,
Kerrie
This is SO frustrating. I am not covered by insurance and pay for all my Relpax out of pocket so I am not limited to any number per month, other than by the exhorbitant cost. The real reason I don’t take them and suffer in the fetal position for 72 hours straight sometimes, is because my neurologist, who is board certified in migraine treatment has categorically instructed me not to take more than 2-3 Relpax per week, as a MAX or they will indeed cause rebound migraines. I get migraines almost every day, so that’s why I CANNOT, not DO NOT take them.
MZ, I agree that it’s terribly frustrating. Medication overuse headache is a serious issue for a lot of people, but not everyone is susceptible to it. Specialists are still trying to sort out this mess—they say treat every migraine attack or you have more migraine attacks, but don’t treat more than 10(ish) a month or you’ll have more migraine attacks. They’ve used categorical rules, which simplifies things and in some ways helps more people than without, but doesn’t allow for individual variations. I’m sorry you spend so much of the month in horrible pain.
Take care,
Kerrie
I too am only allowed 9 per month. My problem is if I take one the next day I get an all-over headache that nothing will help! Headaches are so frustrating and this kind of misinformation doesn’t help!
Carolyn, thanks for sharing your experiences. Have you tried a different kind of triptan? Some have more side effects than others. It could be that that one(s) you’ve taken leave you will that lingering headache, but others won’t.
Take care,
Kerrie
My insurance limits my generic imitrex to 12 pills per 40 days & that’s only available through mail order. It’s fewer if I order through a regular pharmacy.
I try a NSAID, compazene & a muscle relaxant before I use imitrex, unless the pain has come on sudden & is increasing in intensity faster than normal. I used to think more sleep would cure a migraine if I awoke in the middle of night so I took a muscle relaxant instead of a triptan. I’ve learned not to waste my time & now only use imitrex if I wake in pain.
I don’t wish this illness on anyone, but sometimes I do wish the Dr’s truly knew what it feels like to deal w/ chronic migraine.
Mindy, I’m with you. Some really do seem to get it, but others sound like they don’t ever hear what their patients have to say. Thanks for sharing how you choose your medications. I’m always curious to know how other people make such decisions.
Take care,
Kerrie
Oh. My. God. How upsetting. I’m covered for 6 triptans a month and I’m intractable chronic with aura. Maddening is correct. I can’t even find the words and this time it’s not because of my migraine brain.
Jennifer, we had a WTF-fest in my household when I first saw the article!
Take care,
Kerrie
Yes, yes, and yes! The reasons you gave are exactly the reasons I don’t always take a triptanright away. This is maddening.
Debbie, agreed!
Take care,
Kerrie
I don’t like the way it makes me feel afterwards. I feel “fuzzy” for days. I’d much rather see if I can get it to go it’s course and treat with Tylenol. Only when it’s gotten to the point I can’t keep anything down and I feel like blowing my brains out, then I’m willing to break down and use an injection. Then I’m no good to anyone for at least 2 days. No driving, or much thinking..the headaches still kind of there, but not as bad. I’m allergic to all NSAID’s and have found that only in extreme rare cases do I need a narcotic, and even then it will usually make the migraine worse, or the nausea or both. I don’t know why I don’t reach for the injection more often..migraine fog, pain fog, and years and years of nothing available have me somewhat programmed to just stick it out. Wish I could figure a way to unprogram myself.
Debbie Lee, it seems like bad side effects are a strong enough reason to avoid the injections if at all possible! I’m wondering if a different type of triptan would be better for you. I assume you use sumatriptan (Imitrex)—it is the least expensive triptan, but also the one with the most side effects. You might find an orally dissolving tablet of rizatriptan (Maxalt) is or the Zomig nasal spray is just as effective (or more so) without the side effects. Also, triptans work best if they’re taken as early in the migraine attack as possible. I wonder if maybe the injections taken at a late stage aren’t actually relieving the migraine. It could be that side effects aren’t the issue, but that the medication isn’t actually relieving the migraine. It may not be a matter of unprogramming, just figuring out a more effective way to meds with fewer side effects. Best of luck.
Take care,
Kerrie
I only get 9 triptans a month. I’m too young for social security so I have to work full time. My office had lights that are way too bright for me so I am often in constant pain. I will try Advil, Aleve, Excedrin, salt, caffeine, and chocolate before using a triptan because triptans often the only thing that works so I need them to last. If I get a headache on the weekend, which is almost a certainty, I don’t take a triptan. Instead, I sleep all day so I can save the meds for when I have to function.
When you don’t get enough of the only medication that actually works to be able to function properly every day, you’re always trying to find a balance between being pain-free and saving the medication for emergencies.
Carly, you really hit the nail on the head in your last sentence. I’m sorry you know so well what it’s like.
Take care,
Kerrie
I only get 9 triptans a month. I’m too young for social security so I have to work full time. My office had lights that are way too bright for me so I am often in constant pain. I will try Advil, Aleve, Excedrin, salt, caffeine, and chocolate before using a triptan because triptans often the only thing that works so I need them to last. If I get a headache on the weekend, which is almost a certainty, I don’t take a triptan. Instead, I sleep all day so I can save the meds for when I have to function.
When you don’t get enough of the only medication that actually works to be able to function properly every day, you’re always trying to find a balance between being pain-free and saving the medication for emergencies.
A new migraine specialist I began seeing in San Diego told me to stop taking the Triptans, which I’ve been on for years and is the only way I function with migraines 20+ days a month. Her suggestion was to do a week of ‘triptans detox’ in the hospital. When I get a migraine she told me to go to the ER for a tordol shot, DHE shot, nauseau shot, fluids and maybe some narcotic. I found this crazy to hold off on the triptans, wait to see of it got so bad I had to go to the ER (which it always did) and then dealing with that whole ER situation (which is a nightmare on top of what I already have). I tried Botox multiple times with no luck unfortunately. I have stopped seeing this neurologist, not a fan of this “tough love” approach, it is so frustrating . I am back to triptans at the first onset of the migraine, DHE nose spray, nauseau pill, and maybe Percocet if it gets bad enough. I honestly do not want to imagine how I would function without the triptans.
Crystal, “detoxing” from triptans is useful if someone may have medication overuse headache, but there needs to be a better plan in place than going to the ER if it becomes unbearable. All of those meds mentioned for you to get in the ER, you can also inject yourself at home (or can take through another rapid delivery method). Some headache specialists believe quitting acute meds cold turkey before starting a preventive is the best approach, but it leaves many patients without any relief. Also, detox takes a week in ideal scenarios, but some people struggle with it for a couple months. I’m glad you’re at least able to function. I hope you’re able to find a doctor who is a good fit for you and some relief.
Take care,
Kerrie
Wow! The comments made by this doctor….. just awful!! “confusional episode related to the migraine?!?!?!” You have got to be kidding me! There is enough stigma and miss-education surrounding migraines. We don’t need this unhelpful clod making things worse!
Karen, the article is very frustrating. I appreciate that the doctor realizes some people do get very confused during migraine attacks, but was disappointed to see it used in this context. There are so many reasons we don’t take meds… but I’ve never heard of someone being too confused to do so.
Take care,
Kerrie
Post is old I know, but I have had confusions migraine for the past 25 years. Not every migraine but landed in hospital 6 months ago as the migraine with prolonged confusions migraine. It happens.
My severe headaches and my migraines (yep, different) start in much the same way. It’s hard for me to decide to take a triptan knowing that it could just be a severe headache and, therefore, not work. I have head pain daily – migraine or other – and my insurance only approves 9 triptan pills a month. BUT they will also approve the same triptan in a different delivery method. Zolmotriptan pills and Zomig nasal spray – same drug, double the amount for 1 month.
Ally, interesting that they’ll approve the same drug in different delivery methods. Thanks for the suggestion—I just added it to the Migraine.com article that I have waiting to go up.
Take care,
Kerrie
That is a serious combination of mis-quoting and lack of understanding on the author’s and doctor’s part.
I too have insurance Triptan limits but oddly enough they will let me fill two different ones in a month, but not two fills of the same one. Thankfully my doctor lets me have two different prescriptions. Otherwise, getting a higher dose and cutting them in half can be a good option. As is figuring out which one you may get a higher quantity of (such as 9 instead of 4).
I have a constant headache (NDPH), so its often not obvious until its VERY obvious when I have a migraine coming on (I don’t get an aura). So, I wait until I’m fairly sure to take a Triptan. Otherwise there are probably a couple opportunities a day I would take one, instead of a couple times a week. I take Oxycodone for NDPH exacerbations but that doesn’t work for migraine. I take Triptans for migraines which sometimes work for NDPH exacerbations, but I want to save them for migraines as I have a high tendency of building tolerance to medications even when that isn’t supposed to happen. Its way too complicated. Best wishes.
Kate, you’re absolutely right that it’s way too complicated! And it sounds like you have a particularly fine line to walk with both migraine and NDPH.
Thanks for mentioning that your insurance allows multiple kinds a month and that cutting them in half can work, too. It’s amazing to think how hard we work just to get the meds that allow us to function.
Take care,
Kerrie
All of the above people sound just like my story. I take 160mg of inderal daily ( I’m kinda maxed out wirh if if I want a somewhat normal blood pressure ) take Fioricet for pain but, have to ration it off so it last a month. I get Botox injections every 3 months which I cringe with pain during injections (behind the ears really hurts) tried all kinds of different meds. Anti-depressants, anti seizure, etc. Nothing really works 100%. It’s frustrating when you go to the doctor and they just don’t seem to get it. Guess we all are doing the same thing. Coping and trying to make it through each day with minimal pain.
Julie, I’m sorry you haven’t found anything that provides solid relief. Many of us with chronic migraine need multiple different preventives to add up to relief. It’s like chipping away a little bit here and there. But, of course, with more drugs come more side effects and other complications. I hope, hope, hope the CGRP drugs provide more of us with substantial relief.
Take care,
Kerrie
Yes, for one, Insurance certainly puts a limit on number of doses covered per month, even with the generics. Not sure they really know best what is good for our brains, but anyway… Secondly, when you have that limited supply and you get a migraine almost every day, it’s a constant evaluation of “what is it that I am hoping to do today vs what might I need this shot for later this week?” Every shot I take involves, an evaluation (done in a migraine fog) about the ROI for hopefully feeling better today vs a different day for that that big meeting on Thursday or dinner with friends I am hoping make it to on Saturday, etc. I know they say the sooner you get on top of the migraine, the less likely it is to go on, but I have never used up all my shots in the first 6 days of a month to leave myself “unprotected” for the remaining 24 (not to mention that you can’t take it 6 days in a row anyway).
Katie, it’s such a difficult balance. That’s possibly what upset me most about the article—most of us make very careful calculations about how and when we use our meds, yet this article made us seem cavalier and, well, dumb!
Take care,
Kerrie
This is such a good article!! I am one of those who wakes up during the night with a migraine and try to wait or sleep it off. It NEVER works!! A year ago I was complaining to my doctor about the amount of tabs I can get a month and she suggested that I cut them in half. Most of the time a half works for me. Why didn’t I think of this years ago??? My fear of triptans is that I was told they can cause heart damage. But, they are the only thing that works for my chronic migraines.
Thanks, Sue! Splitting triptans is coming up more often lately. Do you mind telling me which kind you take? And don’t fret, triptans have a low cardiovascular risk unless someone already has heart disease. Here’s a recent abstract on the issue: http://www.ncbi.nlm.nih.gov/pubmed/25246519
Take care,
Kerrie
They totally left out the biggest reason I don’t take a triptan. I need to function. My abortive is injectable imitrex and after I take that, I am no good for a few hours. I have constant migraines and need to be able to care for my kids and drive. So unless I’m in for the day, I can’t take my abortive yet, and I need to try and make do with something else.
Nancy, I’m also surprised that wasn’t mentioned. Maybe that’s where the bizarre postdrome comment was going?
Take care,
Kerrie
I will sometimes wait to see if a NASID works before taking a triptan. This is partly to save triptans, but also to avoid side effects of triptans. They zonk me out hard, so if a NASID plus caffeine will take care of it enough to function, then great.
That doctor sounds like a sarcastic jerk.
Amanda, it just makes sense to put off the big guns if you have something else that often works. Do you mind me asking how often the NSAID plus caffeine helps you? Is there a way you can tell if it will or not? We all have our own ways of managing meds and knowing what our bodies need. I’m curious how other people do it and also if there’s something we can learn from each other.
Take care,
Kerrie
This is absolutely right. I try other pain meds first before I go to my imitrex-50mg. I am only allowed 9 per month. I have a headache almost every other day. Tried Botox for 1/1/2 years, and it’s effectiveness has finally worn off or my body has just got used to it. Trying to get used to just taking 1/2 Fioricet a day for my wake-up headache. Used to take 1 a day and on really bad ones, maybe 2 spread out during the day. My really bad one makes me take the fioricet, then my imitrex plus phenergan plus later if I still have it, Norco. I don’t think neurologist have any idea what we chronic migrainers go through. I will be 70 in Sept. and try to be a very active person between headaches. Getting harder and harder and very discouraging. At present, my regular GP has more of a handle on this than my neurologist. I have also been to lots of different neurologists, all different opinions. I even went to MHNI which had me doped up like a zombie, then finally quit working. Someone needs to come up with some remedies for us. I am also a retired R.N. who does a lot of research on my headaches and have tried lots of things. I am also on Inderal 80mg. LA for prevention. Not much help.
Jill, I’m sorry the Botox has stopped helping. Some doctors totally get it and others don’t. There’s often a sort of black hole between people with episodic migraine who do fine with insurance limits on triptans and those of us who don’t. Best of luck finding some relief.
Take care,
Kerrie
I agree 100% with what you are saying. What you just described is what I deal with everyday.
I thought it was me. Sorry you get headaches, I know the feeling, thanks for sharing your story it helped.
OMG. Either that doctor was seriously misquoted or has his/her head stuck squarely in the wrong end. Of all the ridiculous comments I’ve read over the years, these smack of patient-blaming more than most. “Nonadherence” my backside — maybe the problem is that doctors are prescribing them incorrectly. I’d better stop now while I’m still Rate PG-13. 🙂
Tammy, agreed. I do think the reporter was a large part of the problem, but still. I was quite angry when I first saw the article.
Take care,
Kerrie